Bill Overview
Title: Sickle Cell Care Expansion Act of 2022
Description: This bill establishes programs to increase treatment and other services for populations with sickle cell disease. Sickle cell disease is an inherited blood disorder that can lead to pain, anemia, infections, and stroke. Specifically, the Department of Health and Human Services must award grants to federally qualified health centers, community-based organizations, or other nonprofits that treat or otherwise support populations with sickle cell disease for education and advocacy programs concerning the disease. Additionally, the Health Resources and Services Administration must establish a program to provide scholarships or student loan repayment awards to individuals who commit to engage in clinical practice or research related to sickle cell disease for a period of obligated service as physicians.
Sponsors: Rep. Crist, Charlie [D-FL-13]
Target Audience
Population: People with sickle cell disease
Estimated Size: 100000
- Sickle cell disease primarily affects individuals of African, Hispanic, Mediterranean, and Middle Eastern descent.
- Sickle cell disease affects approximately 100,000 people in the United States.
- Globally, it is estimated that sickle cell disease affects millions, particularly in sub-Saharan Africa and India.
- The legislation targets the expansion of care and service infrastructure, potentially impacting all individuals diagnosed with or carriers of sickle cell disease.
Reasoning
- The policy primarily benefits individuals with sickle cell disease and their surrounding communities.
- With approximately 100,000 individuals affected in the U.S., the budget is substantial enough to cover significant expansions in care and educational outreach.
- The impact varies depending on direct involvement with the disease, location, and access to existing resources.
- Given the demographic of those primarily affected by sickle cell disease, certain areas and populations will see more benefit.
- Some interviews should include individuals not directly affected by sickle cell to understand broader societal awareness and support for the policy.
Simulated Interviews
Community Health Worker (Atlanta, GA)
Age: 34 | Gender: male
Wellbeing Before Policy: 5
Duration of Impact: 20.0 years
Commonness: 10/20
Statement of Opinion:
- I think this policy is a crucial step forward. Many families I work with struggle to get the care they need.
- Education is critical; this will help communities understand and manage the disease better.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 5 |
| Year 2 | 7 | 5 |
| Year 3 | 8 | 5 |
| Year 5 | 9 | 5 |
| Year 10 | 9 | 5 |
| Year 20 | 9 | 5 |
Medical Student (Chicago, IL)
Age: 22 | Gender: female
Wellbeing Before Policy: 7
Duration of Impact: 10.0 years
Commonness: 15/20
Statement of Opinion:
- Loan repayment in exchange for commitment to sickle cell research is appealing.
- This could influence my career path positively, furthering opportunities while addressing a significant health issue.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 8 | 7 |
| Year 2 | 8 | 7 |
| Year 3 | 9 | 7 |
| Year 5 | 9 | 7 |
| Year 10 | 9 | 6 |
| Year 20 | 8 | 6 |
Mother (New York, NY)
Age: 40 | Gender: female
Wellbeing Before Policy: 4
Duration of Impact: 10.0 years
Commonness: 5/20
Statement of Opinion:
- Accessing treatment has been a struggle. With this policy, I'm hopeful we'll see improvements in care availability.
- More support and education would lighten our load significantly.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 5 | 4 |
| Year 2 | 7 | 4 |
| Year 3 | 7 | 4 |
| Year 5 | 8 | 4 |
| Year 10 | 8 | 4 |
| Year 20 | 8 | 4 |
Physician (Dallas, TX)
Age: 55 | Gender: male
Wellbeing Before Policy: 6
Duration of Impact: 20.0 years
Commonness: 12/20
Statement of Opinion:
- Additional funding could help us expand our research and provide care to more patients.
- There's a need for continuous education in medical facilities, which this policy supports.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 6 |
| Year 2 | 8 | 6 |
| Year 3 | 8 | 6 |
| Year 5 | 8 | 6 |
| Year 10 | 8 | 6 |
| Year 20 | 9 | 6 |
High School Student (Houston, TX)
Age: 18 | Gender: female
Wellbeing Before Policy: 3
Duration of Impact: 20.0 years
Commonness: 8/20
Statement of Opinion:
- Awareness about sickle cell isn't enough among my peers; this could really change things.
- Better treatment access and support services are desperately needed.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 5 | 3 |
| Year 2 | 7 | 3 |
| Year 3 | 8 | 3 |
| Year 5 | 9 | 3 |
| Year 10 | 9 | 3 |
| Year 20 | 9 | 3 |
Nonprofit Director (Miami, FL)
Age: 29 | Gender: male
Wellbeing Before Policy: 6
Duration of Impact: 10.0 years
Commonness: 10/20
Statement of Opinion:
- This policy could bring the support network we need up to par.
- Expanding educational resources is a top priority for our community.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 6 |
| Year 2 | 8 | 6 |
| Year 3 | 9 | 6 |
| Year 5 | 9 | 6 |
| Year 10 | 9 | 6 |
| Year 20 | 8 | 6 |
Retired Nurse (Boston, MA)
Age: 65 | Gender: female
Wellbeing Before Policy: 5
Duration of Impact: 10.0 years
Commonness: 7/20
Statement of Opinion:
- There’s always been a gap in care and resources for sickle cell that this policy is addressing.
- It may be able to help ensure better long-term outcomes for future generations.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 5 |
| Year 2 | 7 | 5 |
| Year 3 | 8 | 5 |
| Year 5 | 8 | 5 |
| Year 10 | 7 | 5 |
| Year 20 | 7 | 5 |
Research Scientist (Los Angeles, CA)
Age: 45 | Gender: male
Wellbeing Before Policy: 6
Duration of Impact: 20.0 years
Commonness: 12/20
Statement of Opinion:
- Additional funding for sickle cell research will augment our current projects.
- The policy aligns with advances in genetic research, offering room for new findings.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 6 |
| Year 2 | 7 | 6 |
| Year 3 | 8 | 6 |
| Year 5 | 8 | 6 |
| Year 10 | 9 | 6 |
| Year 20 | 9 | 6 |
Public Health Official (New Orleans, LA)
Age: 50 | Gender: female
Wellbeing Before Policy: 7
Duration of Impact: 10.0 years
Commonness: 15/20
Statement of Opinion:
- This policy helps fill systemic gaps, but execution will be the key.
- Successful implementation could serve as a model for tackling other health disparities.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 8 | 7 |
| Year 2 | 8 | 7 |
| Year 3 | 8 | 7 |
| Year 5 | 9 | 7 |
| Year 10 | 9 | 7 |
| Year 20 | 8 | 7 |
Teacher (Phoenix, AZ)
Age: 36 | Gender: female
Wellbeing Before Policy: 7
Duration of Impact: 5.0 years
Commonness: 18/20
Statement of Opinion:
- The policy seems important, though I am not very aware of sickle cell issues.
- Educating teachers could also be beneficial to improve community health awareness.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 7 |
| Year 2 | 7 | 7 |
| Year 3 | 7 | 7 |
| Year 5 | 7 | 7 |
| Year 10 | 7 | 7 |
| Year 20 | 7 | 7 |
Cost Estimates
Year 1: $150000000 (Low: $125000000, High: $175000000)
Year 2: $160000000 (Low: $130000000, High: $190000000)
Year 3: $170000000 (Low: $140000000, High: $200000000)
Year 5: $190000000 (Low: $160000000, High: $220000000)
Year 10: $210000000 (Low: $180000000, High: $240000000)
Year 100: $500000000 (Low: $400000000, High: $600000000)
Key Considerations
- The necessity for ongoing assessment and adaptability of program funding to meet emerging needs and challenges within the sickle cell community.
- Potential for disparities in access to the enhanced services among different geographic locations and communities.
- Importance of integrating this policy with existing healthcare infrastructure to avoid duplication and ensure efficient use of resources.